3-year-old with rare genetic disorder gets ₹16 cr injection for free from US

Nashik: A toddler who is going to celebrate his second birthday soon is receiving a special gift of a ₹ 16 crore life-saving injection by a US firm for free from a lucky draw contest.

Shivraj Daware, from Nashik in Maharashtra, is claimed to be suffering from a rare genetic disorder, Spinal Muscular Atrophy (SMA).

“SMA 1 is a genetic disorder. One out of 10,000 children get affected by the disorder. It slows down the movement of the child and the muscles stop working. Later, it leads to the death of the child,” said Dr Ramant Patil who had treated Shivraj earlier.

He will be receiving an injection for Zolgensma – a gene replacement therapy, which is manufactured only by a US-based firm and is the most effective drug for such patients, according to doctors.

Shivraj’s father, Vishal Daware and mother Kiran, are from a middle-class background, the news of the rare disorder and the huge cost of injection was devastating news for them, but they didn’t lose hope.

After the initial diagnosis of Shivraj, his parents chose to travel to Mumbai at Hinduja Hospital for proper treatment where neurologist Dr Brajesh Udani suggested that Zolgensma injection was the drug of choice to save the kid’s life, said Vishal in an interview with PTI.

Money was the toughest problem of all for Devraj’s father who runs a photocopy shop in Nashik.

After seeing them struggle, Dr Udani suggested the family apply for a lottery to be brought out by the US-based firm for conducting clinical trials through which the family can get the injection for free if luck stands with them.

On December 25, 2020, Shivraj became the lucky winner from the draw to get the injection. On January 19, 2021, Shivraj was delivered the injection at the Hinduja Hospital.

Before Devraj, a one-year-old baby girl Vedika Shinde from Pune also suffering from SMA Type 1, took the injection nearly two months ago. Unfortunately, she died on Sunday evening.